Monday, October 15, 2007

For parents

I am not your enemy.

If your child is autistic and you want a better life for him or her, I am not your enemy. I want a better life for all autistic people. However they communicate, however well or poorly they score on standardized tests. Whether or not they have medical problems in addition to neurological differences, whether the diagnosis is autism, Asperger syndrome, PDD-NOS or something else altogether, I want the best possible life for every person on the spectrum.

By “better life” I mean physical and mental health and I mean freedom from harassment and discrimination and institutionalization. I want respect for your child and accommodation as needed and I want them to have jobs if they want jobs and friends and partners if they want that. I want your child to be happy and healthy.

By “healthy” I do not mean non-autistic. Autism is a lifelong neurological condition, not a disease.

I have never opposed the legitimate treatment of legitimate medical problems. Most children and adults go to the doctor when they are ill. I object to the characterization of autism itself as an illness. I object to the treatment of intestinal problems being characterized as “curing autism” and I object to the marketing of expensive, experimental treatments to desperate parents. More than that, I object to parents being told they should be desperate.

If you have a child who is autistic, I object to people saying that your child has no soul, or is a train wreck, disaster, walking nightmare or empty shell. I know that your child is a valued human being. I know, too, that you want the best for him or her.

I am all for teaching kids to communicate. What I object to is that teaching and learning for autistic children are packaged and marketed as “therapy”, while teaching for non-autistic children is called “teaching." I disagree with anyone who believes that speech is the only “real” way to communicate. I think that children need time to play and relax as well as time to study and learn.

When your child grows up, unless I am mistaken, he or she will still be autistic. I want a safe and accepting world for the adult (s)he will become. I want a world where people will employ her, take him out to dinner, appreciate them for who they are. I know that many people will see this as foolish and naïve. I’m okay with that.

But I am not your enemy. If you have a child on the spectrum and are hoping to cure him or her, hoping to get rid of the autism, I don’t want to argue with you. Most likely, you and I don’t even use the word “autism” to mean the same thing. If you are one of these parents working to change your child, know that I am working, too. If your quest to change the course of autism fails, perhaps the quest to change societal attitudes will fare better. In which case, your autistic child might have a less hostile world to live in.

Thank you for this reminder. I have something framed on my dresser to remind me of this (http://miscthing.blogspot.com/2006/09/my-mission-statement.html). Evenso, it is so easy to lose sight in all of the hype, especially when you feel like you're going against the masses. This is why I read blogs--to not feel alone.

I wish more parents of autistic children heard your message. The way you see things and the way you articulate your thoughts are just incredible. There should be more Bevs out there. I come across so many parents through blogs or in person who are so busy trying to cure their children that they don't stop and smell the roses. I feel bad for these parents, but even worse for their children. It's such a shame. Thank goodness for you and many of the others on the Autism Hub who give me hope for a more tolerant/accepting world for my son to grow up in.

I love the way you explain things. I appreciate the learning and growth I'm experiencing as I explore your site. Thank you. Not only are you helping me to help my son...you are helping so many in so many ways to understand, be informed and come together on the things we can agree about. Thank you, thank you, thank you!

I LOVE reading blogs and the writings on people with autism who are adult! It has helped me accept my boys for who they are and be more conscious of how my non-verbal son may be trying to communicate! Thank you so much for writing this! This is my first time to your site, so I'm looking forward to exploring it!

Bev,I am caught off guard by your disdaine for DAN! My son has made amazing progress with DAN!(the site on Confederate Ave. no less) If you believe they cruelly give false hope please do not assume they help no one.

I appreciate that you can see another side on the matter. Is this the first positive report you have come across re: DAN!? What is it about DAN! that causes a following of negativity? My experience is that they are certainly not an 'anti-autistic society' group and would back those interested in bringing about societal change. Can't it all work together or am I missing something?

I went to your presentation on Communication at Autism Institue in Louisville and I left afterwards in tears. Finally, there was someone who could put all those thoughts into the words that wouldn't come out of my mouth.I made a picture to complement the video you showed at that presentation and I posted it on my blogitlookslikespiltmilk.blogspot.com

I have a son with AS and have been feeling particularly blue about what the future holds for him. I read your pice and thank you - you've made me realise that I am one of the few chosen ones who have been given the priveledge of raising a child who is so truly special! Once again, thank you!

Thank you so much for your belifes your blog brought tears to my eyes. I have been fighting people to just accept my son for who he is and who he will ALWAYS be and that is a person who is Autistic and that he wouldnt be him if he wasnt. I hope one day that we all will see Autistic people in a more understanding way and accept them for who they are. A PROUD parent of an Autistic child.

Dear friend, you can't imagine how it was important for me to find your blog today. I'm deeply emotioned and I want to thank you for sharing so much information and emotions with us. I'm a mother of a wonderful Aspie boy. He is now 14, and he was diagnosed at 6. He is a strong worker, and because of his determination he has overcomed lots of difficulties till now. But he still is "different" in social terms. I dont want to think about the future with fear. I prefer to work hard (with him) to prepare himself to be strong and to face the world in a positive way. But I know that he will face lots of difficulties...Your blog will be very important for me, from now on. I'll be back to follow your articles. Your experience will be a great help.Thank you for sharing. Thank you for being there.Be happy! You deserve it.

"What is it about DAN! that causes a following of negativity? My experience is that they are certainly not an 'anti-autistic society' group and would back those interested in bringing about societal change."

Excuse me? An organization called DEFEAT Autism Now is not anti-autistic?

Brilliant! I must share your site with my 18yo daughter. She has Asperger's and it is part of who she is. We get her help for what she needs help with (anxiety, diet issues) but she has always been a delightful person and I can't see anything that needs "curing".

As an NT parent of an Autistic daughter I have learned over the years that as soon as I assume to know what is 'best' for her or think I know better or more about a situation involving her, I need to stop and be silent and to listen for her truth. Because everytime I assume something I get it wrong. My daughter has incredible patience and is a great teacher. I just have to make sure I am the one who has the listening ears and teachable heart.

Hi Bev,I am fairly new to blogging and relatively new to the diagnosis of Asperger's Syndrome and Autism for me and my two boys and it often amazes and saddens me how much division there is in this community.

I appreciated reading your heartfelt post and will be interested to read other postings.

I really appreciate your sentiment that we are not enemies. I think that one of the saddest things in the world of autism is how families have turned against each other to such a degree. I do think we all want the same thing and I think you have elucidated it beautifully. I offer my thoughts in the spirit of respectful discourse.My experience has been different. My son is mostly recovered from his ASD now- the ASD was not "who he is" it was obscuring "who he is" like dark clouds obscuring the sun. Healing him has had nothing to do with "making him act normal" and he has received almost no "therapy". I homeschool my kids (my other son had ADHD and OCD), well actually we unschool. I do this because I want my kids to live in freedom to be themselves and live free of stigma and negative expectations about what they “should” be able to do and how they “should” behave. My sons are free to indulge their interests and learn what they want in the way they want. They are free to be as quirky and as atypical as they want to be.Having said that, understanding that my kids’ neurological symptoms were the result of underlying biological injuries, and then healing them from these injuries, has resulted in my ASD son no longer being on the spectrum and my other son no longer having ADHD, OCD, and severe anxiety. There are thousands of children who did have autism, whose biological injuries have been healed, and who no longer have autism. So we know that autism is not always a life-long neurological condition, although it may often be such. Regardless of whether or not ASD is lifelong I absolutely agree that all people, including those with ASD, have the right to live in a world that respects and honors them and their abilities as they are in the present, not as we may “want” or envision them to be in the future.There is no shame in being injured, sick, or poisoned. I myself am all three of those. The way I see it, healing someone whose injuries result in neurological manifestations should not imply a lack of respect for the person any more than giving glasses to a child with poor vision implies that you can't respect or love the child unless he can see better. We do it because improved sight is helpful for the child. I am healing my son so that his true self can shine through. I am in no way trying to “shape” or “control” how that self should look or behave. He has always been extraordinary and I hope to god he never becomes normal! “Who my son is” is bigger than ASD, and his gifts and creativity are ever stronger the closer he gets to being healed. In our experience the gifts and the struggles of ASD are not “two sides of the same coin”. I feel sad that only in the world of autism are parents who want to heal their kids labeled as "desperate" in a negative way. We hear so many stories in the media of parents who fight to extremes to help their children with seizures, cancer, paralysis, and physical injuries, and they are always hailed as heroes. When the child has autism, suddenly these parents are deluded and to be pitied. These parents are some of the most informed and knowledgeable people I have ever met and are the LAST people to be "suckered" or to blindly follow someone. It's not doctors who push biomed on parents, it's informed parents demanding what they need from doctors. It’s easy to judge and label people whose behavior we don’t understand, but please, in the spirit of being allies and not enemies, please don’t judge biomed parents any more than you want to be judged yourself.

Definately not an enemy, but going the other way, this is the issue that I have for my own son. He is high functioning Aspergers/PDD, he is so bright, and we try to keep him focused and make sure all his homework is done and he has everything located in a safe place. I wish I could get through to him, that I am not his enemy. I just want him to be successful, and to be able to live a full life. Anyways, nice to read this article...thank you.

I don't want to change my son. I just want people to understand him. When I tell people he has Asperger's they have no clue what I'm saying. If I simplify it and say he has Autisim, they don't buy it because he's not what they had in mind.

I think one of the major problems is that for most people it does not take a major mental leap to go from words like "syndrome", "condition", "disorder" to construing that to be "illness" and from "illness" to "epidemic" and from that to "cure" and "eradication" and calling the centre for disease control! Especially when there's hyperbole involved!!!